1: First Things First

Chapter 1: What To Do In An Emergency

Do not call 911 if someone has died a natural, expected death at home. Instead, call the most responsible physician (e.g., your family doctor, doctor on call, palliative care physician) who can tell you what you should do. When a death is expected to happen at home, talk to your doctor about what you should do before, during and after the death.

Call 911 or your local hospital, fire department or ambulance service in almost all other emergency situations when you cannot deal with whatever is happening.

You can call 911 in Quebec if a person has died a natural death at home. Legal arrangements have been made with response teams not to resuscitate a person who has died a natural death at home. Talk to your family doctor about your specific circumstances before calling 911.

Talk to your physician and health care team about who should be called in what type of emergency. Keep a list of their names and telephone numbers by the telephone and in your pocket. What may originally feel like an emergency may only need some telephone help from your doctor, nurse, home care case manager, social worker or hospice staff or volunteer.

If you are expecting to care for someone at home, and have enough time to prepare, take an emergency first aid course or upgrading program or a home care course for family members. There are also family health care programs offered through local organizations including St. John Ambulance, The Red Cross, community colleges, YMCAs, and others. The more you know what to do in an emergency situation, the more comfortable you will feel. Focus on probable or possible emergency situations based on the individual medical circumstances involved.

As with all good planning, you should think about what you will do in different situations before they happen. Just as we should plan our fire escape route from our home, we should also know what to do when we are caring for a loved at home who has a terminal or life-threatening illness. The more we ask others about what we might expect to happen, the more we can prepare to deal with anything that comes along. Every person's situation is unique so you need to adapt the general information to your specific circumstances.


Chapter 2: Getting Organized: 'To Do' Checklists for Families

Concerns When Someone is at Home

Who Can Help You

Other People Who Can Help and Whose Telephone Numbers You Should Have Handy

Checklist After Death

After the Funeral/Memorial Service

One of the causes of feeling overwhelmed when caring for someone is trying to keep track of the information you need or already have. The following checklists can be used whether the person you are caring for is at home, in the hospital or other facility. The lists can help you near the beginning of caring for someone and/or near to the end of their lives. Adapt the lists to suit your own needs and ignore the rest.

Also check the medical, personal information, legal, funeral and financial forms in Chapters 13, 15, 16, and 17. These forms are meant to hold the information you need to complete some of the task in the checklists below. Remember you do not have to know and do everything at once. Use the checklists to pace yourself. Most of the tasks do not need to be done right now.

Concerns When Someone is at Home

Do you know enough about pain and symptom control to help the person who is home? If not, how can you get the information you need quickly from the physician, home care nurse, pharmacist? (Also check Chapter 8 on pain and symptom control.)

Do you know what to do in a medical emergency at home? Who do you call? When? For what type of emergencies?

Will the physicians make house calls? How can you reach the physician day or night?

What has the person who is ill decided about being resuscitated if they stop breathing? Have they put it in writing? Where is it? If they want to be resuscitated, learn CPR.


Has the person written out a Power of Attorney for Personal Care and a separate one for financial and legal decisions saying who will make these decisions on their behalf if they cannot speak for themselves? Where is it kept? Who is the person(s)? Does the family know who this person(s) is and will they work with, or against, this person? If the person has not made someone their substitute decision maker, either get them to sign the form if they can or have the immediate family agree to have one spokesperson for the person. It is not legal but it helps you to make decisions at home and with physicians. These forms are available at provincial government health or justice ministries, some bookstores, doctors' offices, or your own lawyer.


Are you using all of the relevant and available home care resources such as visiting home nurses, social workers, homemakers, occupational and physical therapists, dieticians, massage therapists, chiropractors, speech therapists, palliative care volunteer programs? Are you using other resources in the community including spiritual supports, professional and community volunteers as you need them? (Check the chapters in Parts 3 and 7 on hospice care and community resources.)


Does the person's life and disability insurance policies pay for extra home care support? Do the policies allow the person to take some of the money out before their death to pay for extra costs? (For example, some policies that normally pay out $100,000 to a beneficiary, now allow the person's whose life is insured to take out some of that, say $25,000, to pay for extra home care costs.) Check with the insurance agent or the insurance company to see if the person qualifies.


Has the person written out a legal will to prevent legal difficulties about their estate after their death? Where is it kept? Who is the executor (person in charge after death)?


Where is the information kept on bank accounts, investments, life insurance, safety deposit boxes, credit/charge cards, and vehicle ownership and insurance? When possible, you might want to change bank accounts into joint accounts so that only one person has to sign to deposit or withdraw money. This is also true for safety deposit boxes. In this way, accounts and boxes are not frozen until after the estate has been probated or settled.

Has the person signed an organ donation form? Where is it kept? What restrictions exist around organ donation because of the person's disease or if the person dies at home? (Age, disease or location of death are some of the criteria used to determine if organs are acceptable for donation. Find out in advance so that the family is not left feeling rejected if organ donation is not accepted.)

Has the person made any pre-funeral arrangements? Where is the information?


Some transportation and hotel/motel companies give partial refunds (called 'compassionate travel policies') if you need to travel for the death of an immediate family member. An immediate family member is usually a: spouse, child, brother or sister, grandparent, grandchild, in-law or legal guardian. A proof of death certificate is required. The application form is available from the companies offering this refund and is usually completed within 90 days after the death.


Do you have a plan to get some support and relief for yourself? Who can you turn to in your neighborhood for immediate help? Who might help you by staying with your loved one for a few hours while you take a break? Who can stay for longer periods of time (e.g., a weekend) so that you can visit friends or family elsewhere or go to a hotel for a weekend of spoiling yourself? Are there respite services available that can care for your loved one while you take a few days off? (Check Chapters 18 and 19 on community supports and support circles for some ideas.)


Do you feel comfortable talking with professionals, volunteers, neighbors and family members helping you and your loved one? (Check the chapters in Parts 3 and 5 on hospice care and emotional and spiritual care for some tips). Is there someone who can help you communicate with others?


When looking at funeral costs it is helpful to check out:


· If the person is an honorably discharged Canadian veteran with insufficient funds for a proper funeral, The Last Post Fund (800-563-2508) will help. Also call War Veterans Allowance: 1-800-387-0919.

· Veterans Affairs Canada may also have funds available for funeral costs. Contact your local branch office.

· If the person dies from a work-related illness or accident, your local government department or agency responsible for worker safety may cover some of the funeral costs.



Who Can Help You

Family Doctor or Most Responsible Physician

Will he or she make house calls? How can you reach them night and day with questions, or in an emergency?

Will they sign the death certificate and/or come to the home to legally declare the person has died? This means the person does not have to go to the hospital to be declared dead there. (Note: the laws requiring a physician to declare a person has died at home vary from province to province. Check with your family physician.)


Home Care Case Manager

This person coordinates the nurses, homemakers, suppliers, equipment providers and other agencies. Do you know how to reach them day and night with questions, or in an emergency?


Pharmacist

This person often knows the most about your medications, how they interact with each other, side effects, etc. Do you know how to reach them day or night with questions, or in an emergency?


Palliative Care Program/Service

This may be a program in your hospital or in your community that helps to meet your loved one's physical, emotional, spiritual and information needs. For example, some communities have pain and symptom control coordinators. Your local home care program can tell you what is available.


Is there a palliative care program/service in your community? Do you know how to reach them day or night with questions, or in an emergency?


Other People Who Can Help

Your priest, minister, rabbi or spiritual leader.

Private nursing and home care companies to supplement your care.

The Red Cross which provides some services, equipment, volunteers and financial aid.

Disease specific group (e.g., Canadian Cancer Society, AIDS Committee).

People who call long-distance to offer support and encouragement to your loved one.


Checklist After Death

Sometimes it is helpful to have a checklist of things that need to be done after the death of a loved one at home. (If the death is at a hospital, freestanding hospice or other health care facility, you are helped to do whatever is necessary.) Some of the tasks may already be done. This list gives you direction at a time when decisions are expected from you. Sit down with your family and divide the various tasks so that no one has too much to do. If the executor of the estate is someone other than a family member, then you may leave many of the legal, financial, tax and other requirements for him or her to complete.

The forms included in this book provide you with much of the information that is required by a funeral home, executor, lawyer, family physician, etc. If there was no time to fill in these forms, some of the following suggestions will help ensure that most things are covered.

Call the family physician and ask for further directions if you have not pre-planned for this situation together.


If you are alone at the time of death call someone right away to give you emotional support and to help arrange the next few days' activities. You may be exhausted and need help right away.


Call your funeral home to arrange for the transportation of the body to the funeral home. Make an appointment to finalize the arrangements. If your loved one left specific instructions, then arrange to follow them as completely as possible. If there were no instructions, decide on the type of funeral and whether the body will be buried or cremated.


Collect the various information forms included in this book so that you do not have to remember all the information.


Arrange for family members and friends to take turns answering the door and phone.


You may need some immediate grief or bereavement support for family members either through a formal counselor or your spiritual leader and friends. Ask for the comforting support you need right now.


If you are not the executor then notify him right away and ask for his help.


Decide whether you wish flowers and/or donations to a charity (assuming you have no instructions from your loved one).


Make a list of the immediate family, friends and colleagues from work you want to notify by phone or telegram.


Decide if you wish specific people to act as pallbearers and put a check mark beside their name on the list in Chapter 17.


Make a separate list for people who live far away and whom you wish notified by letter and/or printed notice.


Prepare a copy of a printed notice if you wish to use one.


You or someone else should call or telegram the people on the list to notify them of the death.


Different religions require different arrangements. For example, Roman Catholics usually use Prayer Cards at the funeral service. If you are Roman Catholic, your church or funeral home can suggest a printer who will do these quickly. Other religions require other specific things to be done, so check with your cleric or funeral director for help.


If small children belonging to the deceased or to a survivor are not attending the funeral, arrange for help until after the services are over.


Coordinate the supply of food for the next few days.


Arrange for help with daily household chores.


If people are coming from out-of-town, arrange a place for them to stay and eat.


Arrange for the care of any family pets.


Take precautions during the funeral services to protect the home against burglaries. Have someone housesit.


Write an obituary. Funeral directors can offer suggestions but some or all of the following can be included: name, age, place of birth, cause and place of death, occupation, educational background, military service, memberships held, volunteer work, and list of the immediate family. Give the date, time and place of services. If the funeral director does not provide this service you can deliver or call in the obituary to the newspaper yourself. Most newspapers charge for this notice.


Decide what to do with the flowers after the funeral.


Arrange to have someone pay the clerics, organist, and others who need payment the day of the funeral.


After the Funeral/Memorial Service

The paper work and bureaucracy of dying, the insurance policies, the probating of the will, etc., can be very frustrating. Some of the following steps need to be done right away and others can wait. Pick and choose where, when and how to use your energy. Whether you are the executrix of the will or helping someone who is, it is important to expect delay, frustration and illogical procedures. Except for the last step of sending thank-you cards, the executrix of the will usually carries out all of the following steps. If this person is not a member of the family, she needs information and help from the next-of-kin during some of the steps. (Check Chapter 17 on preparing funeral arrangements for more information.)

When you get information from any officials, take note of their name, the date you spoke with them and what they said. This is especially true with large bureaucracies where each person may give you different information.


If the deceased lived alone, notify the utilities and post office. Have mail forwarded to your address or the executor's address.

If the deceased rented his home, notify the landlord and arrange a time when you can move all the belongings.


Get several copies of the death certificate. You need these for insurance, banking and other legal matters. The funeral director usually arranges to get these for you or you can get them yourself from your provincial ministry responsible for births, deaths and marriages.

Fill out the person's financial status form as at the time of death. (See Chapter 16.)


Notify insurance company(ies) about all appropriate policies.


Check with your local Health and Welfare Canada office about any death benefits, and spouse/family benefits. Check with your funeral director, home care case manager, your lawyer and accountant, palliative care service to find out if new programs exist that might be helpful. Some programs are not widely known so not everyone on this list may have the same information. Ask them what specific documents you need to get these benefits.


Also check with the Canadian Ministry of Veterans Affairs for any military benefits.


If the person received any government checks, those departments have to be notified of their death (e.g., Old Age Pension, Canada Pension Plan (CPP), Employment Insurance, Family Benefits).


Check with credit unions, trade unions, fraternities, the Royal Canadian Legion, credit card companies, auto clubs, special associations or organizations that the deceased was a member of, for similar pensions and other benefits.


Collect all outstanding bills and pay them. In cases of large bills, mortgage payments, business debts etc., you should get the advice of a lawyer and/or accountant.


Cancel all credit cards right away.


Notify the following organizations of the person's death: driver's license bureau, charitable organizations the person contributed to, post office, pension/government health insurance and other government agencies (e.g., to cancel Social Insurance Number), and organizations or associations that the person was a member of.


In the case of car insurance and registration, the insurance must be changed to the name of the new owner before car registration can be changed.


Notify the land titles office in your province if the person owned property.


Different jurisdictions have different regulations about how to probate a will (if it is necessary at all). Check with your local government to see what the regulations are. For simple estates, it is often possible to settle the will out of court without the help of a lawyer, however, family reform laws are more common and lead to more restrictions to estate settlement. When in doubt, speak with a lawyer.


You may also ask your insurance agent, funeral home director or other professionals who deal daily with these questions. They may advise you or refer you to an estate lawyer.


Complete the person's income tax form at the end of the year. If the estate is large or complicated, get the advice of an accountant or tax lawyer.


Distribute the assets according to the person's will and auction off or dispose of the other assets as required. Large estates do require certain laws to be followed and again you should get legal advice on the proper procedures.


Make a list of people you wish to send thank-you notes to including those who attended the funeral; family members and friends who sent condolences and/or charitable donations; and physicians and other caregivers who gave the deceased and family good care.


Note: I began by saying that this process can be very frustrating and emotionally draining. It is important to recognize that the grieving process continues and that these steps are often an important part of that grieving. Cleaning out closets, selling furniture, closing bank accounts are all emotionally traumatic and take their toll on you but they also help you to release some of the your emotional pain. With painful memories, take the time to remember more than the pain. Remember the person, the pleasures you shared together as well as the pain. Recognize your personal needs and take time to pamper yourself. You deserve it.

Take the time you need, ask for the specific help you deserve from other family members and friends (they may not know how to offer help) and use this opportunity to acknowledge your real loss.


Chapter 3: A Summary of Some of the Basics

Some people will not have time to read each chapter of this book thoroughly. The following general points are a good preview and review. More detail is given in specific chapters. Use the Table of Contents and Index to find the answers to your specific concerns.

This book is based on the assumption that we can choose how we cope with terminal or life-threatening illness. This book suggests ways to provide medical and family supports to a person who is dying but the book is not meant to imply that this period of living until death is simple or without physical and emotional hardships.


Hospice or Palliative Care

The words palliative and hospice mean exactly the same thing. I use both terms. The hospice philosophy of care is about trying to meet the physical, emotional (including social), spiritual and information needs of people with a terminal or life-threatening illness and their families.


Pain and Symptom Control

Most people can be relatively pain free, comfortable and alert until they die. The days of people shouting out to die because the pain hurts so bad should be over.

If a patient is suffering severe pain, get the doctor in charge to check with a palliative care specialist who can suggest methods to reduce the pain now. We have all the knowledge and skills, right now, to manage overwhelming pain. All of the pain may not go away. Most of us suffer from some physical pain from aging, arthritis, back problems, etc. However, unbearable pain is not necessary.

The secret to effective pain control (relief) is giving the right drug(s), in the right amount, in the right way and at the right time. This balance requires physicians and other hospice team members to do proper, ongoing assessments of a person's pain and to consult with others who may have information that is helpful. Proper pain medication usually prevents overwhelming pain from returning while keeping the patient alert. If pain does suddenly increase (called 'breakthrough pain') extra medication must be immediately available to relieve it. In those rare cases when pain cannot be relieved enough, a person can be placed in a drug-induced coma for a period of time to alleviate the pain. No ones needs to suffer the type of unmanaged pain that we may have witnessed our parents and grandparents suffer.

Once pain is managed, other symptoms like vomiting, bedsores, and dry mouths are more easily controlled.

Remember that other medical and complementary therapies can reduce pain and symptoms. Use those that are most helpful and proven in the circumstances.


Personality

People's basic personalities do not change when they find out they have a terminal or life-threatening illness or when they are grieving. How they dealt with stressful or traumatic situations in the past is likely how they cope now.


Your Role

Caring for others in such a personal and intimate way as hospice care is one of the most fulfilling and life-defining opportunities in our lives. When you care for someone else you know in your heart, mind and soul that you are making a real difference in that person's life. Caregiving gives us that unique opportunity to remember what is truly valuable in our lives and within our families and community. Caring is not always easy. It can be physically exhausting, mentally taxing and emotionally draining. It can also be exhilarating, rejuvenating, peaceful, joyful and awe inspiring.

Choose a role that is comfortable and supportive to the person who is dying and to those who are grieving. You should also get the support from family and friends you need to help you. Hospice care is about mutually caring for each other during this time.

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Family Hospice Care:


Pre-planning and Care Guide


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